9/21/14 – Thank you to everyone who entered! The randomly chosen winner of a copy of When Caring Takes Courage, by Mara Botonis, was “Linda.” Linda, please look for an email from me!!

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As I sit down to write this long overdue piece, I can’t help but be struck by how many wonderful people I’ve met through dementia advocacy. It’s safe to say that as a whole, these are some of the most gifted and compassionate human beings on the planet. Each has a unique story, but those stories are the common thread that creates such a bond between us.

Mara Botonis falls into that category. To be honest, I don’t recall exactly how we first crossed paths; however, I do know we were instant friends. I’m grateful that social media provides an avenue for meeting people all over the country – and the world, for that matter.

A Caregiver’s Handbook

But, I digress. The intent of this post is to introduce you to what I believe is the best resource in existence for Alzheimer’s and dementia caregivers. I know that’s a lofty statement, but Mara’s book, When Caring Takes Courage, just blew me away. To say I wish I could have had a handbook like this 15 years ago would be a gross understatement.

Around the time we moved my mom to assisted living, the facility’s marketing director gave me a copy of a very well known book on caring for a loved one with dementia. Over the years, I probably opened it three or four times, but always found myself feeling overwhelmed by the pages and pages of information – it was too much. Probably some fantastic information, but the critical bits were buried among too many words. I never did read the book.

When Caring Takes Courage is different. Mara aptly terms it as an “interactive guide” for caregivers, and that’s exactly what it is. Think of it as a caregivers’ manual. If you want to sit down and read it from front to back, you can certainly do so, but the real beauty is in the ability to grab the book and refer to a specific topic that might be of immediate concern.

What is Biography Based Care?

The cornerstone of the book is Biography Based Care®. This approach helps to adapt care based on your loved one’s life experiences, likes and dislikes, and current abilities. Biography Based Care ® recognizes that just as each person living with dementia is unique, so is the way the disease manifests itself. Techniques that work with one person may yield disastrous results for another.

Mara points out very early on that this is a book intended to be USED, not just read. She encourages readers to write notes throughout, “dog ear” pages of particular interest, and even tear out pages for frequent reference.

When Caring Takes Courage includes a plethora of tools you can use to develop a personalized care plan. It begins with a comprehensive Biography to help you gather information about your loved one. As the disease progresses, these pages will be increasingly valuable – a source of ideas and approaches for dealing with new challenges.

Pages Meant to Be Used

Inside the book, Mara also provides various checklists and worksheets to help assess care needs, plan activities, document and track symptoms, compare and score care options, create a safe environment, and much more!

You won’t just read about challenges with communicating, bathing, toileting, difficult behaviors, and wandering. Instead, you’ll get real suggestions on ways of dealing with these things. For example, Chapter 4, “Bathing Without Battling” provides succinct bullet points listing things you can do before, during, and after bathing to help make the experience less traumatic for everyone involved.

While the first section of the book addresses “Getting Through the Day,” the second provides a guide for “Creating the Best Possible Day.” The Biography Based Care ® concept introduced in the opening pages are equally important here, as they allow caregivers to build the day around the whole person, their history, preferences, and unique needs.

Moments that Matter

Mara consistently reminds us to consider the whole person for whom we are caring. That means looking at their physical, spiritual, emotional, social, and intellectual needs as well as their sense of purpose.

Being a caregiver is exhausting, but the latter half of the book will help you achieve some of the balance that is so elusive. It’s easy to get wrapped up in (and overwhelmed by) the ever growing to do list, but it’s important to make the most of every moment. These final chapters will help you make time for “moments that matter.”

You’ll find countless ideas for activities that cater to the whole person’s needs. These include holiday and special occasion activities, but also past times for everyday. Ideas are grouped by interest – pets, music, sports, travel, worship, and many more. If that isn’t enough, the book also comes with an 80-page companion guide titled Alzheimer’s Adapted Activities for Every Interest and Level of Ability.

World Alzheimer’s Month Giveaway!

Whether you’re a family caregiver, a professional caregiver, or a facility administrator, you need this book. In my opinion, When Caring Takes Courage should be part of required continuing education in every memory care facility around the world.

September is World Alzheimer’s Month, and what better way to mark it than with a giveaway!? I couldn’t be more pleased that Mara has generously offered to give one lucky reader a copy of this must have guide to caregiving. To enter the giveaway (***Continental U.S. only, please***), just click below to leave a comment on this post. A winner will be randomly drawn on Friday, September 19th.

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Mara Botonis is a 29-year veteran of the senior housing and healthcare industry. Her passion for elder care began at age fourteen when she spent her summer break volunteering at a nursing home. When Caring Takes Courage is dedicated to the memory of her beloved grandfather, Bill, who she lost to Alzheimer’s disease.

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49 thoughts on “When Caring Takes Courage: A MUST HAVE Caregiving Guide”

Whether I win or not, this is a book I want to have. My husband has Alzheimer’s and as his caregiver, I need all the help I can get. This has been a journey I never, ever thought I would be going through. It’s the first time I’ve ever had contact with anyone who had this disease! So this has been unreal for me. I had no experience at all in dealing with it. I’m so happy that there are books like these to help us, as caregivers, because we need all the help we can get……thank you again.

I am so tired and my husband is still able to function and take care of his daily needs but I have to watch and remind him when he forgets. So, I know there is still much to come. I do not wish this on anyone.

I have bought several books, thinking they would help me. The few I actually read had some good points. I am so anxious to read this book! My husband still functions fairly well on his own, most of the time. I know we still have a very steep mountain to climb and I am already exhausted!

Reblogged this on The Memories Project and commented:
So agree about dementia caregivers needing info, but not having time to read it. I look forward to checking out this interactive book designed with that in mind.

Caregiving that is respectful of human dignity is one of the most challenging labors in the world. So much work needs to be done to assist caregivers and their families to preserve their health and ability to continue providing loving care in the desired setting. This guide will benefit many. For those looking for NIH end of life research-including caregiving-you might check out the National Institute of Nursing Research website. http://Www.ninr.nih.gov Keep up the wonderful work and know that your dedication serves to make the lives of many more sustainable.

I wish I had something like this when I was caring for my father. I have a very demanding spoiled client now that I really could use some help with. It is so stressing trying to get her to do what she can without getting stressed because she wants to be fed like a baby instead of feeding herself. I really need to check this book out!

The new plague, Alzheimer’s disease has now surpassed cancer in polls as the most dreaded diagnosis. It’s great to see thorough, research-based resources coming out to help – Lord knows the average deliverer of this diagnosis hasn’t caught up with the need yet!

Have read many books on Alzheimers as I care for my mother, but this looks like incredible for myself as well as the key to encourage my siblings to understand the disease more. I too will buy it if I don’t win it…no problem. Thank you!

Finally a support manual for Caregivers that is functional and therefore will really provide the much needed support that is lacking with this disease. Really love the fact that it is meant to be written in and pages ripped out to use as needed. Hope I win, I surely can benefit and anything that helps me to be a better Caregiver to my husband is definitely on my must have list.

I must have this book. Every day i cry about my dad who no longer acts like my dad. He thinks that I’m really my mom who passed away in 2010. He’s been in an assisted care facility for two years now after he lived with me after mom died. My guilt overwhelms me most days because I had thought that I could take care of him myself but after he fell on my driveway which is steep because he forgot to lean in to the hill I couldn’t bear to see him suffer anymore. It was like having a two year old again who doesn’t always know how to protect themselves anymore. I protected my three children until they grew older and better at making decisions for themselves but I went into overwhelm when I realized that he was going to get worse at that and it became too much for me to handle. I feel that I had to distance myself somehow so he went into assisted care. I want to feel better about myself, not selfish and self absorbed. So far everything about my relationship with my dad now brings me pain and my life brings me no joy. If I don’t win this book I will certainly get it anyway. I am desperate to break through and see the good times again.

This has been the saddest part of my life, seeing my mother whole life change, it has been really hard for me, trying to figure out how can I help you, what can I do to make it easier for you, I think this book would help me so much, I love my mama, her struggle is my struggle

My mom has been suffering for at least 3 years. I think that we are in the home stretch now. Heartbreaking. This disease is devastating and we all need to find a cure. Until a cure is found we need to find all the resources we can because the caregivers suffer right along with with the patient. Whether or not I win this book I will purchase it because I am always looking for ways to cope. THank you.

my mother recently fell & broke her ankle. Her dementia got worse. She is now going thru rehabilitation. Every day is getting the best of me. I’ve never been around anyone with dementia so this has really been a learning experience for me. I don’t know if she will ever come back home or stay in a nursing home. I pray everyday for strength & guidance.